Tag Archives: anxiety

In the comments on the Why Talking is Hard post, a few people mentioned that they have a tendency to repeat themselves when speaking and, oh boy, can I relate to that. I’ve spent a lot of time thinking about my tendency to say things over and over to someone, because it’s a rather embarrassing habit to have as an adult.

The underlying causes are probably a bit different for each of us, but I’ve come up with a few ideas about why autistic people are often prone to repetitive speech:

Poor inhibition

This feels like the most obvious culprit. Once we get started on a favorite subject, look out. We just can’t seem to stop, even when it’s obvious that the other person is getting bored or uncomfortable. Part of infodumping is often going over the same facts or stories repeatedly, as if we aren’t sure the other person is really grasping why this subject is so freakin’ awesome.

Poor inhibition is a component of impaired executive function–a plain old lack of ability to put the brakes on speech. Infodumping or monologuing about a special interest feels closely related to poor inhibition. Repeating the same information within an infodump is likely an extension of the phenomenon that leads to infodumping in the first place.

Basically it’s all one big case of “Help–I’m talking and I can’t stop!”

Perseveration

This is more of a “broken record” kind of repetition. It’s asking someone the same question or making the same statement over and over, even though the other person has already answered or acknowledged it.

I do this a lot to The Scientist, especially in relation to making plans.

“Let’s run tomorrow morning.”

Ten minutes later: “Tomorrow is a running day, right?”

A half hour later: “I want to run in the morning. Oh, wait, I said that already, didn’t I?”

Which doesn’t stop me from wanting to say it another ten times as the evening wears on. With practice I’m learning to silently think the question or statement and then remind myself that it’s already been answered. That works in a mostly-but-not-always kind of way.

This aspect of repetitive speech feels like lack of inhibition combined with compulsive thinking.

Catastrophizing

This is the one that eventually earns an exasperated “Would you just let it go already?!” response from whoever happens to be unlucky enough to be on the receiving end. It’s the kind of repetition that other people quickly tire of because it comes across as irrational and anxiety-laden. A worst-case scenario that just won’t die.

Normally, when I repeat myself in a perseverative way, the other person’s response temporarily quiets the need to do it again. But when I’m catastrophizing, the other person’s response is unfulfilling and I continue to say the same thing in different ways, trying to elicit a more reassuring response. Which is impossible, because no response other than “yes, that highly unlikely disaster is sure to happen” would be satisfying.

Short term memory deficit

This one occurred to me while watching the videos that I made for my attempt at video blogging. At times, I simply forget that I’ve already said something or made a point. I forget what I was talking about, have talked about or wanted to talk about and get stuck in a loop of similar thoughts that keep coming out in slightly different ways.

I also noticed that I echolalically repeat myself, reusing phrases or words within a conversation. It’s hard to say why–maybe as touchstones or because they’re caught in my conversation buffer. The funny thing is, it’s rarely the same words or phrases that get repeated from one conversation to the next.

Missing social cues

I think sometimes I repeat myself because I’m not getting the social communication cues to confirm that the other person has heard me. I need very obvious cues, like verbal affirmation. The cues that work for typical people–sustained eye contact, affirmative body language–are usually lost on me.

If I don’t get the expected verbal affirmation, I keep repeating what I said until I’m sure the other person is getting my point. Closely related to this is the difficulty I often have in actually making my point verbally. In way, my repetition is an attempt to edit my spoken words after the fact, which I don’t think is how talking is supposed to work.

Note: The annual Autism Positivity flashblog is being held again this April 30th. Visit the website to find out how you can participate.

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For the past few weeks I’ve been getting ready to move. That’s meant making lots of phone calls to change over utilities and insurance and such. And packing. Lots of packing. Of course packing also means deciding what to keep and what to toss and what to donate, plus a good amount of organizing and reorganizing. Because, you know, it’s important that my entire file cabinet go into the box in the best possible order, with not a single scrap of unnecessary paper cluttering up my system.

I’m happy to say that nearly everything on my list is done. Which is good, because the moving truck arrives in less than forty-eight hours. I’d also like to say it all got done smoothly and according to plan, but that would be a lie.

You see, I have this thing that happens when an anxiety-inducing event is imminent: I suddenly feel very very sleepy. I don’t just mean that I feel a little tired–I mean I feel 2 AM tired.

Mostly it happens before social events. The Scientist will be busily showering and shaving and choosing an outfit and I’ll be calculating down to the minute how late I can start getting ready.

Fortunately, it doesn’t take me long to make myself presentable. That means I can safely put off getting ready until the last ten minutes before we need to get out the door. Any sooner and I’ll be all ready to go while simultaneously wanting to lie down on the couch and take a quick nap.

The strange thing is, even when it’s happening, I know the tired feeling is an illusion. It’s my brain trying to get my body to play enabler, to somehow avoid the anxiety-inducing event. Some people get butterflies in their stomach or a need to pace. I get a sudden urge to hibernate in a blanket fort for a week or two.

So in addition to all of the usual chaos of getting ready to move, I’ve been trying to outsmart the sleepy feeling. Not surprisingly, actually sleeping doesn’t work. In most cases, it isn’t even an option because the thing I need to do is both imminent and time sensitive. But even with most of the moving tasks, where I could grab a nap and then do them later, there is no actual sleeping to be had. Because if I lie down, all I’m thinking about is the task I should be doing. So then I’m both sleepy and annoyed with myself for procrastinating.

It helps a bit to think of the feeling as something other than sleepy–to call what it really is, which is some sort of defensive withdrawal. When I look at it that way, I understand intellectually that I don’t need or want to sleep. I also know from experience that the best “cure” is to do the anxiety-producing thing. Often, I simply need to get started and the feeling clears.

To get the stuff on my moving list done, I used a lot of the same tricks I use to manage my executive function deficits: lists, rewards, schedules, telling myself that I just have to call one insurance company instead of all three or pack up a box of clothes, which is easy, rather a box of dishes, which is harder. Once I get on the phone or haul out the packing materials and tape and boxes, it’s much easier to just keep going. It’s the getting started–getting past that initial wall of do not want–that’s the real trick.

Addendum

When I told The Scientist that I planned to write about this topic, he suggested that I also write about, “the way you yawn when you’re bored during a conversation.” My yawning habit (for lack of a better description) has long been a source of annoyance for both of us. The Scientist assumed I was bored but not telling him; I was flummoxed whenever he brought it up because I usually wasn’t feeling bored when it happened.

Coincidentally, a New Yorker article about the science of yawning popped up on my Tumblr dashboard within hours of the The Scientist’s suggestion. Buried beneath a lot of other more complicated theories is the suggestion that in addition to yawning when we’re bored, tired or hungry, we sometimes yawn when we’re anxious. That makes sense to me. Yawning definitely helps me clear my head and it gives my nervous system a poke, both of which help me stay focused. Coincidentally, that’s a pretty accurate description of the effects of stimming too.

These days I mostly catch myself before I yawn during important conversations. When that familiar feeling creeps up, I get up to pace or intentionally engage in a stim that has the same effect as yawning. But it was interesting to learn that there are all sorts of theories about yawning and they aren’t all centered around boredom or fatigue.

Addendum to the Addendum

The article I linked to above also mentions that autistic people are less likely to be contagious yawners. I’m curious whether autistic readers think this is true? I’m very susceptible to contagious yawning, to the point that I yawn when my dog yawns. In fact, I’ve been yawning pretty much constantly while researching, writing and proofreading the last two sections of this post.

This is part 2 in a series about sensory sensitivities and atypical sensory processing. Read the other parts: Part 1 | Part 3 | Part 4

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I don’t like pistachios.

I have a sensory sensitivity to bright lights in a dark room.

What’s the difference between the two? I can eat pistachios if I have to. I won’t enjoy it, but if I happened to be served something that had some pistachios on or in it, I could eat it without having a negative biological reaction.

On the other hand, I can’t watch TV or look at a computer monitor in a dark room. The brightness of the screen is painful and my instinctive reaction is to look away or close my eyes. If The Scientist and I are watching TV at night, I need a small amount of ambient light to reduce the contrast between the television screen and the darkened room. Without it, I’ll squint at the screen and quickly develop a headache.

I know this because, like the t-shirt incident, I’ve tried to acclimate myself to watching TV in the dark.

I can see how someone who doesn’t know that I have sensory sensitivities might assume that I dislike watching TV in the dark in the same way that I dislike pistachios. If you’ve never experienced sensory sensitivities, it can be hard to believe that they’re real and that they have a biological component to them. But my body’s reaction to those two scenarios is very different. Continue reading The Difference Between a Sensory Sensitivity and Disliking Something→

I had jury duty recently. For those of you who aren’t familiar with the US jury service system, US citizens are periodically required to fulfill our civic duty by reporting to a local courthouse and making ourselves available to sit on a jury panel for a criminal or civil trial. The processes vary quite a bit from place to place but often you show up for a day at the courthouse and get sent home without actually sitting on a jury.

Unless you’re really lucky. Like me. Then, somehow, you get put on a jury 2 out of the 3 times you’ve ever been called to serve.

Together with seven other people, I got assigned to a jury panel for a 3-day civil trial. The case was strange. The testimony was at times fascinating, at times mind-numbingly boring. None of that is especially what I want to talk about.

Like so much else in life these days, I approached jury duty as an experiment. A socializing experiment. I decided it was the perfect opportunity to reboot my approach to interacting with strangers. It was a relatively safe, time-limited interaction–if things went poorly, I knew that I would only have to spend three days with these people and then I’d never see them again.

In the past, I would have done my best to pass, hoping that my fellow jurors would like me and more importantly, not think I was too weird. This time around, I made a conscious decision not to worry about that. Continue reading Socializing: Reboot→

The rate of being diagnosed with a co-occuring condition if you’re autistic is very high. In fact, I’m curious if there’s anyone here whose sole diagnosis is autism or Asperger’s. I have a comorbid diagnosis of an anxiety disorder and probably have mild undiagnosed OCD. The really interesting thing is that so many of us don’t feel that all of our comorbid diagnoses are a good fit. I wrote about how my anxiety doesn’t feel disordered to me and so I don’t think the diagnosis fits.

I also think it’s interesting that we’re often given diagnoses for conditions that have many overlapping traits with autism. For example, dyspraxia and sensory processing disorder share nearly all of their traits in common with autism. How do clinicians decide that one autistic person should also get a dyspraxia or SPD diagnosis while another person with a very similar profile doesn’t? I would love to hear your thoughts on this or anything related to the article in the comments here.

Also, I owe a huge thank you to the people who filled out the survey about comorbid conditions and patiently worked with me on sharing their stories for this article. My next article for AWN will be about motherhood and the challenges that being on the spectrum can present as well as how it might affect our choices regarding childbearing. Okay, so that’s likely more than one article.

If you’d like to share your thoughts and experiences, I’ve created a short 5-question survey at Questions about Autistic Motherhood. It’s open to both women with children and women who do not have children. As long as you identify as being on the spectrum and would use the term mother to refer to yourself if you had a child, then you’re welcome to take the survey. I’m especially interested in the question about what supports autistic moms would benefit from–if there are enough responses, that will be its own article, because I think its a subject that doesn’t get nearly enough attention.

I don’t want to break out ofit or stretch it or push myself out of it. Mostly I’d like to build a blanket fort in my comfort zone and never leave. But I know that isn’t reasonable. As an adult with responsibilities, there are times when I have to step outside my comfort zone.

My approach to these times used to involve a lot of metaphorical pushing and breaking and stretching. I would power through, often with an angry determination to just get it over with. This made hard things harder, but I didn’t realize that I had a choice.

Recently–and entirely accidentally–The Scientist showed me that there’s a better way to go about getting out my comfort zone. After doing some post-game analysis of why what we did worked, here’s what I’ve come up as a framework for helping someone step out of their comfort zone in a gentle, supportive way: Continue reading Stepping Outside My Comfort Zone→

Around the time I started blogging, a blogger that I was following made her 100th post and I was in awe. I wasn’t sure if I could stick with this blogging thing long enough to make it to 100. I wasn’t sure if anyone would read what I wrote or if I had enough ideas to make more than a few posts.

It turns out that I probably have enough ideas for a thousand posts. Even better, I have an amazing group of readers who I’m enjoying getting to know. I didn’t realize how interactive blogging can be. Again and again I’m humbled by the comments here, by the kind words and the trust. By your willingness to share and be open and support each other and make this journey with me.

And to those of you who read and lurk, I see you, pushing my post view count up day after day. I know you’re out there and I’m grateful. Don’t be shy about joining in the conversation if the spirit moves you.

A Change of Plans

I was going to post one more survey tomorrow before I leave for my Big Adventure, but I’ve decided to wait until I get back. My executive function has been in a downward spiral for the past week. Right now I have the EF of a squirrel.

So here’s The Plan:

100th post

Put blog on hiatus

Big Adventure Part 1: Go far far away

Big Adventure Part 2: Come home, immediately move to new apartment

Die a little

Recover

Post survey part 4

Start writing again

I have no idea how long 5 and 6 will take so I’m not sure how long the hiatus will last. Maybe close to a month? Hopefully my Big Adventure will give me lots to write about.

I’m sorry to keep messing with the survey schedule. I know unexpected change can be frustrating.

WTF Executive Function?

My Big Adventure is looming large. A major trip followed by a move is a lot to cope with. Massive change, lack of control, uncertainty, sensory triggers, major sleep disruption, yadda, yadda, yadda. I used to think that the uneasiness and disorientation I felt before a big event was anxiety but I’m starting to think it’s actually stress-induced deterioration of my executive function.

The degree of my uneasiness is directly proportionate to how stressful I anticipate an event will be. The next few weeks are 7-9 our of 10 on my stress-o-meter. Not just an evening or a day of level 7-9 stress, but a full two weeks of it. The anticipation I’ve been feeling over the past week has given me a chance to step back and observe my reactions to extreme stress.

Here’s what I’m discovering: the closer I get to the Big Adventure, the worse my executive functioning is becoming. About 10 days ago, I started to notice that I was having trouble concentrating on work. I made myself a detailed schedule, plotting out a reasonable number of tasks each day and allowing myself five days of no complex work leading up to my trip. That helped a lot.

Then I noticed that I was having trouble staying organized. Moving and preparing to travel overseas involves a lot of planning. Random details were constantly flying around in my head, especially things I absolutely shouldn’t forget. Turning the utilities on/off. Buying dog food. Changing my address on this account and that account and some other account. Packing tampons and melatonin and my laptop cord. Picking up moving boxes at the grocery store. My passport!

Finally, I took out a notepad and wrote everything down–lists, important dates, schedules, reminders. The notepad sits on the kitchen counter and every time I think of something, no matter how trivial, I write it down.

Gradually, I started to lose interest in communicating. I’ve mostly stopped keeping up with social media, email, etc. Soon after that, I started to struggle with writing. Just getting through this fairly straight forward post is taking me forever. I keep losing track of thoughts and going down blind alleys. (There also seems to be something wonky about the tenses here, but IDK.)

I’ve been spending a lot of time this week doing stimmy, low-cognitive-demand things, like playing Temple Run, taking long walks and being silly with the dog.

I’ve been double and triple checking everything I do, especially for work. Still, I find myself making a lot of little mistakes. Putting my empty cereal bowl in the fridge instead of the dishwasher. Putting clothes in the dryer but not turning it on. Not realizing I’m wearing my shirt inside out until the end of my run.

So this feeling I get–disconnected, disoriented, unfocused, withdrawn, restless–this thing I’ve been thinking all these years was anxiety is looking more like a deterioration of my executive function. Thinking about it in that way has removed a layer of stress. It also explains why my “anxiety” symptoms only match a small subset of typical anxiety symptoms (restlessness, difficulty concentrating, becoming less social, fatigue).

Instead of worrying about it and beating myself up for not coping well and powering through it like I’ve done in the past, I’m being kind to myself. I’m making accommodations, acknowledging that I shouldn’t be doing complicated work projects right now, taking more breaks during the day, asking for help/advice where I need it, reminding myself that it’s temporary.

By not pushing myself, I feel like I’ve deescalated my stress quite a bit. I’ve also been able to avoid negative coping mechanisms like perseverating, withdrawing or being controlling. This makes for a happier marriage and a happier me.

See You on the Other Side

Assuming all goes as planned, I’ll see you in 3-4 weeks. Until then, be well.

Last November I wrote about my insomnia and nightmares. Since then, I’ve been conducting some experiments. Here’s an update on what I’ve learned:

Sleep Study

In early December I started taking melatonin and I immediately felt like I was sleeping better. To be certain I wasn’t just imagining that my sleep had improved, I conducted a 2-week sleep study on myself.

The Scientist hooked me up with an armband that monitors sleep quality. I wore it while I slept for two weeks, one week on the melatonin and one week off. Thanks to the software that came with the armband, here’s a graphic representation of how well I slept during each of the weeks:

I was surprised by how frequently my sleep is interrupted on any given night. There is one night out of each week that I got a long uninterrupted period of sleep. On most nights the longest period of continuous sleep is a couple of hours or ninety minutes. I knew that my sleep patterns were disrupted, but I didn’t know the problem was this bad.

Some statistics:

Sleep efficiency (time spent sleeping/time spent lying down)

with melatonin: 82%

without melatonin: 80.5%

Average hours of sleep per night

with melatonin: 7 hours 10 minutes

without melatonin: 6 hours 45 minutes

I also found it interesting that I have to spend 9-10 hours in bed to get 8 hours of sleep.

So does the melatonin work? I averaged 25 minutes more sleep per night when I was taking it, which added up to an additional 3 hours of sleep for the week.

Melatonin

Since doing the sleep study two months ago, I’ve continued taking melatonin and it feels like my sleep has continued to improve. There are still nights where I only get 5 hours of sleep (last night, in fact) or I’m wide awake at 3:30 AM, but they’re less frequent. In general, I fall asleep more quickly. The melatonin creates a pleasant drowsiness that makes it easier to fall back asleep when I wake up during the night. Some days I feel a little sleepy in the morning, but that fades after I exercise, which I do first thing after getting out of bed.

If you’re considering taking melatonin as a sleep enhancer, there are some things you should know:

Melatonin makes you sleepy. Take it only at bedtime. I take 5 mg about 30 minutes before bed.

High doses of melatonin have been associated with increased depression and psychosis in people already suffering from these conditions. Also, women who are pregnant or trying to become pregnant, nursing mothers, and individuals with cancer, leukemia, lymphoma, multiple myeloma or Hodgkin’s disease should not take melatonin. It’s a good idea to consult with your doctor before starting the use of a melatonin supplement, especially if you are being treated for any other condition or taking any type of medication.

In the US, you can buy melatonin over-the-counter at stores that sell vitamins and supplements. It comes in 0.75 to 5 mg doses. Taking the smallest effective dose is safer.

Melatonin makes you feel drowsy and relaxed but not drugged, so you should still be able to easily wake if necessary, for example to respond to an emergency call from a family member.

It’s often recommended that you take melatonin every other day so you don’t inhibit natural production. (Personally, I think my natural production is already screwed beyond all hope and always has been, so I take it every day.)

Some people take melatonin for a few weeks then take a week off on the belief that it loses it’s effectiveness if taken continuously. I’ve been taking it for 5 months with only two weeks off (one due to illness and one for the sleep study). I haven’t seen a drop in effectiveness.

If you feel groggy in the morning, try reducing the dosage.

Some people experience nightmares when taking melatonin. (I’ve found that my nightmares have lessened–more on that in the next part).

Other side effects can include: mild headache, upset stomach, lower sex drive and depression. Again, reducing dosage can alleviate side effects. Most people don’t experience any side effects at a dosage of 1 mg.

Some people experience rebound insomnia when they stop taking melatonin. I stopped twice for about a week each time and didn’t feel like my insomnia was any worse than it had been before beginning the melatonin. One way to avoid potential rebound insomnia is to taper off, using lower dosages over 1-2 weeks if you decide you no longer need to take it.

My Nightmare Journal

When I wrote about nightmares, I suspected that they were connected to unprocessed bouts of anxiety. To identify trigger events, I started a log of my nightmares along with some details like possible triggers and whether I’d felt like I processed the triggering event. My goal was to become more aware of triggers and spend time working through them during my waking hours rather than letting my sleeping brain get creative with them.

According to my log, here is # of nights that I had nightmares each month:

Nov 15th-30th: 4 nights

December: 10 nights

January: 3 nights

February: 1 night

March: 0 nights

April : 0 nights

I know what you’re thinking: You did it! You learned to identify your triggers and process your anxiety!

Well, no. I tried that all through December and failed miserably. Then in January, I said “fuck you, anxiety” and I wrote this. And hey, the nightmares disappeared!

Two things seem to be at work here. First, melatonin helps me sleep more deeply, which makes my dreams harder to remember and less vivid. Of the 14 nightmares I had after starting on the melatonin, I rated 6 mild and 2 moderate. That alone is a relief.

The other thing that’s happening? I’ve become autistic in my sleep! On January 23rd, I got my flap back in a dream. After that, I had only 2 nightmares and 1 of them didn’t fit my typical nightmare profile at all. I’ve started dreaming in an entirely different way.

In my dreams now, I often tell people that I’m autistic or consciously think of myself of as autistic. That’s completely new. Twice, when it seemed like someone was going to attack me, setting off a typical nightmare scenario in which I had to physically defend myself, the police showed up and took the threatening person away! That’s never happened before. Another time, I was lost and couldn’t find my new (in the dream) apartment. I told some people who worked in the building that I was autistic and couldn’t remember where I lived and they all offered to help me. That never happens in my dreams either.

This is really exciting. I feel like the way I’m thinking about myself and my relationship with the world around me is changing in a profound way. The changes to my dream life are concrete evidence of this.

That’s not to say I don’t have any disturbing dreams. I have plenty. I dream that I’m late for important events. That I need to call 911 but no one answers or the phone doesn’t work. That I need to run but my legs don’t work. That I’m blind. That I’m in school but don’t know my class schedule. That I have a baby but keep forgetting to care for it.

I also still have weird, inexplicable dreams. That I’m playing golf, but in the opposite direction of everyone else on the course. That I’ve accidentally rubbed the ink from my tattoo off and when I check it in the mirror I notice that I’m also pregnant.

All of those dreams are unsettling, but they aren’t nightmares. I don’t wake up sweating with my heart pounding out of my chest. I don’t cry myself awake. I don’t startle awake because the dream has become so intensely physically painful that I can’t stand it anymore. I don’t spend most of the next day trying to forget frightening images. I’m not reluctant to go to sleep the next night.

I’m okay with having occasionally unpleasant dreams, as long as the really bad nightmares stay away. Will they? Who knows. I’m in a fairly stressful period right now, one that would have typically triggered a nightmare cycle in the past. So far, nothing.

This is Part 9 in the I Think I Might Be Autistic series. In Part 8 I covered the diagnostic interview portion of my autism evaluation and in this part I’m covering the cognitive tests, ADHD test and psychological screening questionnaires.

Cognitive Testing

Cognitive testing for ASD is a mix of verbal and nonverbal tests.

Some I found easy; others were a challenge. One actually made me bang my head on the desk, though I stopped as soon as I realized I was doing it because . . . inappropriate. Most were designed to start out easy and scale up in difficulty so that the last few were very challenging.

If you’re planning to be evaluated, you may or may not want to read about the tests I took in detail. Consider this your spoiler warning.

The verbal portion covered things like describing the similarities between two words (i.e. anchor and fence, statue and poem, allow and restrict), defining vocabulary words and answering general information questions. I found the “similarities” test challenging because some of the pairs had conceptual rather than concrete similarities. The other two sections were fairly easy because I’m both a walking dictionary and an encyclopedia of random facts.

The perceptual reasoning portion was a series of visual puzzles: using colored blocks to reproduce a design, deducing which design comes next in a series, and choosing shapes to form a larger shape. These tests were fun, although I found myself guessing at times.

The working memory tests involved repeating back strings of digits in forward and reverse order and doing math problems verbally. By the end of the digit string tests I was rocking back and forth in my chair with my eyes closed tight. The math problems, on the other hand, were fun. All of these tests made me conscious of how much I talk out loud to myself when my brain is working hard.

The processing speed portion involved locating symbols and coding a series of numbers into symbols. These were both fairly straight-forward pattern recognition tests that required balancing speed and accuracy.

Woodcock-Johnson III (partial): A test of academic skills that included orally identifying written words, orally spelling words given by oral prompt, and doing some math problems on paper, ranging from pre-algebra to basic calculus. I got tripped up by “questionnaire” on the spelling test. It’s one of those words that I always use autocorrect on. There is no autocorrect on an oral spelling test.

Wechsler Memory Scale IV (partial): The portion of this I took tested auditory memory. It involved two parts:

listening to a brief factual story and retelling it, including as many facts as possible, then responding with true/false answers to factual questions about the story (two trials)

listening to a long list of word pairs and then responding to a word prompt with the correct paired word (interminable number of trials)

I struggled mightily with both of these. My working memory is poor, especially when working verbally under pressure.

Rey-Osterrieth Complex Figure test: A measure of organization and planning skills as well as fine motor skills. It involves reproducing a complex drawing using a series of colored pencils that allow the evaluator to track the order in which the figure was drawn as well as the accuracy of reproduction.

Thirty minutes later, without any warning, I was asked to reproduce the same figure from memory. This did not go well. If you looked at the sample figure I linked to above, what I managed to reproduce the second time was basically a box with an X through it, a flag sticking out the front and bowling ball floating in the upper right corner. Bizarrely, I still remember exactly what it looked like and could draw that from memory months later.

Word Fluency: A timed test in which I had to think of as many words as possible that fit the following categories: animals, words starting with A, words starting with F, and words starting with S. These were challenging–I started out with a good head of steam but once I lost my momentum, I started perseverating on the words I’d already named instead of thinking of new words. Until I realized that I could name things from around the room that fit the prompt. Aspie adaptation for the win.

California Verbal Learning Test: Another test involving recalling items from a list with multiple trials. Again, I struggled with this one. The correct strategy, which I realized on the fourth trial, was to chunk the words by category to make recalling them easier. There were only five or six trials, so my realization came kind of late. This test also had me closing my eyes and talking to myself out loud because I was so frustrated with how difficult it was. There might have been some cursing. I was getting tired.

Trailmaking test: A connect the dots type of test–first connecting numbers only and then connecting an alternating sequence of numbers and letters. This measures visual scanning and sequencing ability. Surprisingly, I was quicker at the second series, even though it was the more difficult task.

verbally giving the color of a series of Xs there were printed in blue, red or green ink

verbally reading a list of color words, with each printed in a different color ink (i.e. RED printed in blue ink)

This test was deceptively easy. So much so, that when I saw my results, I was shocked. I scored in the “impaired” range on the first two and in the “high average” range on the third (and hardest) test.

Performing better on the more challenging versions of the Stroop and trailmaking tests leads me to believe that I’m more motivated to perform accurately on challenging tasks and if a task is too simple, I get bored and easily distracted.

Other Neuropsychological Tests

Grooved Pegboard test: A timed test of fine motor skills that consists of putting metal pegs in a pegboard, first with the right hand and then with the left. The only problem I had with this one was accidentally switching back to the right-handed order of inserting the pegs (right-to-left) when I was doing the left-handed test (meant to be completed left-to-right).

Reciprocal Motor Programs test: A test of how well I could repeat and then reverse repeat a series of finger taps.

ADHD Test

IVA Continuous Performance Test: This was the only cognitive test conducted by computer. The computer provided visual and auditory prompts at random intervals. If the prompt was a 1, I had to click the mouse. If the prompt was a 2, I had to refrain from clicking. The test was 21 minutes long. By the halfway point, I was stimming ferociously. I was also determined to ace this test (out of fear of being misdiagnosed with ADHD perhaps) so first I pretended that I was an air traffic controller and if I missed a cue, an airplane would crash. When that stopped working, I told myself that if I missed a cue, a puppy would die. Yeah, I take this stuff way too seriously. It took me awhile to wind down after this test was over because I sent myself into a state of extreme hyperfocus.

Questionnaires

I also completed four self-report questionnaires:

MCMI-III: This consisted of 180 true-false questions that test for 14 personality disorders (e.g. schizoid, depressive, compulsive) and 10 clinical syndromes (e.g. anxiety, bipolar, PTSD). There were also some funny questions, like “I am currently in an airplane” meant to verify that I was paying attention. Or not delusional. Hard to say.

I’ve been thinking and reading a lot about anxiety recently. When I was diagnosed with Asperger’s, I was also diagnosed with Social Anxiety Disorder.

Here’s how I feel about that: Social Anxiety? Yes. Disorder? Not so much.

Disorder implies that my social anxiety is irrational. Is it? Consider this:

“Anxiety at appropriate levels is important for adaptive functioning. There are many environmental hazards that must be avoided and these are often learned through the process of anxiety induction. The resultant anxiety response is learned through the association of certain stimuli with unpleasant consequences.” (from “Autism and the Physiology of Stress and Anxiety”, Romanczyk and Gillis)

Anxiety, like fear, protects us from danger. It raises our guard and makes us wary. In this way, it’s healthy. Without it, we might be less motivated to get an education, to work, to care for our loved ones and ourselves.

What is Anxiety?

Anxiety is a state of worry, concern or dread related to something that hasn’t yet happened and may, in fact, never happen. Think about some things that we typically feel anxious about:

committing to a relationship

giving a major presentation for school or work

becoming a parent

meeting a partner’s family

starting a new job

learning to drive

flying on an airplane for the first time

traveling in a high crime area

When you feel anxious about an upcoming event, you spend more time thinking about it and preparing for it than you would for a more mundane activity. You examine the possible consequences and give extra attention to your actions to ensure the best possible outcome. Anxiety heightens your awareness; heightened awareness sharpens your focus, increasing your safety.

It’s important to note that here and throughout this piece, when I talk about anxiety, I’m referring to appropriate levels of anxiety, not paralyzing anxiety. An appropriate level of anxiety is one that is manageable. I feel nervous in the days before giving an important Powerpoint presentation, but I manage my anxiety and complete the presentation to the best of my ability. An inappropriate level of anxiety is one that prevents a person from completing a necessary or desired activity. For example, if I got so anxious about the presentation that I ended up sick in bed, fainted in the conference room, or lied to avoid presenting.

Not all anxiety is healthy and it’s important to recognize where your anxiety falls on the healthy/unhealthy continuum.

The Function of Social Anxiety in ASD

So that’s how anxiety works in the typical brain. But what about in the autistic brain?

From childhood, autistic people know that we’re missing key information in social situations. We often have difficulty interpreting facial expressions, tone of voice, body language, and non-concrete speech. Some people also struggle with auditory processing and sensory overload in public or group settings.

The results of our social communication challenges can range from inconvenient (missing a joke or not following a conversation) to dangerous (being bullied, taken advantage of or assaulted). There are also negative health consequences–many autistic people need hours or days to physically recover from prolonged or intense social interaction.

Over time, “through the process of anxiety induction,” we realize that certain social situations are “environmental hazards that must be avoided” (as Romanczyk and Gillis described). In other words, because of a very real hazard, we develop anxiety that for us has a very real cause. It isn’t disordered. It’s a defense mechanism, developed through “the association of certain stimuli with unpleasant consequences.”

Social anxiety is, therefore, not only “important for adaptive functioning” in autistic people, it’s essential.

Red Light, Green Light

Autistic social anxiety is not the same as neurotypical social anxiety. If a person with intact social communication abilities has severe anxiety about social situations, then they have a disorder because their fear is irrational. When a person with impaired social communication abilities has anxiety about social situations, they are like a poor swimmer who is anxious about boarding a boat. The perceived risk is real and rational.

If fear is a red light–a glowing “stop” signal in our brain–then anxiety is a yellow light. It’s the feeling that says, “slow down, caution, stop and pause a moment before continuing down this road.”

We should heed this feeling, not cure ourselves of it.

Appropriate vs. Inappropriate

But, some will say, too much social anxiety and you’ll become a recluse! A hermit! The little old lady shouting at those darn kids to get off her lawn!

Well, yes and no. First of all, allow me to horrify the more socially oriented among you by saying this: people aren’t all that interesting and the rewards of socializing are sometimes overrated. Consider the possibility that all of the following (fictional) people are meeting their needs for social interaction:

the person who lives alone, works at home and in the evening participates in role-playing games, an acting workshop and a drumming circle

the person who lives with a partner and has lunch once a week with a close friend

the person who attends classes full-time and prefers to socialize online in text-based formats outside of class hours

the person who chooses to spend time at home with family and only goes out for necessary errands or events

the person who works around people all day and likes to spend their evenings alone

The social preferences of these people may differ from the majority of their peers, but they aren’t exactly in Grey Gardens territory.

Being anxious about socializing is not the same as completely avoiding social situations. It’s possible to manage social anxiety in the same way we manage anxiety about other things. Someone–NT or autistic–might feel anxious about starting a new job, but that doesn’t mean they won’t do it. Most people have strategies for managing anxiety and autistic people are no different.

What is different is that our social anxiety is automatically pathologized and then “treated” with therapy or medication. We’re told that our fear is irrational and we need to change the way we “think about” social interaction. We’re told that if we just “relax a little” we’ll find social interaction much more enjoyable.

What would be far more helpful is to acknowledge our anxiety as valid and support our right to socialize at our preferred level, in our preferred ways, without being stigmatized for it.

What Anxiety Tells Us

So how does social anxiety keep us safe?

First there is the obvious example: when you have difficulty interpreting nonverbal cues, it can be hard to know when another person is a threat. This can be especially true for autistic women and girls, increasing our chances of becoming the target of sexual assault, sexual abuse or domestic violence. The autistic woman who feels anxious about dating, intimate relationships or venturing into unfamiliar situations has good reason to–the statistics for violence against autistic women are alarming.

Autistic people are also often victims of bullying. The autistic boy or girl who is anxious about recess or the school bus has a large databank of negative interactions feeding that anxiety. Their anxiety tells them that unstructured activities with limited adult supervision are a potential danger zone.

Those are both reasonable examples, right? But what about the anxiety-inducing holiday party, trip to the mall, or vacation? Surely that’s irrational?

Not if you’re forced to think about every social activity in terms of cost. There are many analogies for this concept: spoon theory and the social cup vs. bucket analogy are the most popular. I’ll spare you a new analogy and give you an example instead.

Last spring my nephew and his wife came to visit for a long weekend. He’s one of my favorite nephews and I was looking forward to meeting his new wife. Still, I was anxious. Having two additional people in the house for three days would mean a disrupted schedule, unfamiliar noises and smells, a loss of my precious alone time and lots and lots of talking.

The Scientist and I came up with a schedule–scheduling is essential for me to get through three days of company–and then I set about thinking of ways to conserve my resources. I volunteered to drive because I find it relaxing. We scheduled downtime for me on Saturday afternoon while everyone else went out. I suggested we visit a historical site that I knew well, because it would mean a familiar environment plus the chance to infodump in a socially acceptable way.

We had a great time. They enjoyed the places we visited and the meals I cooked. We laughed a lot and had meaningful conversations. Things couldn’t have gone better. And still, Saturday night as everyone sat around the dinner table talking for hours after the meal was finished, I found myself shaking uncontrollably.

Even with all of my planning, even though I was enjoying myself, the day’s socializing had overwhelmed me. I knew it was coming, had felt myself shutting down as the evening wore on, but I ignored the warning signs. I didn’t want to end a great day on a bad note.

Unfortunately, it’s not about what I want. Social interaction has a real physical cost for autistic people. If I don’t listen to the voice of caution in my head and limit my interactions, my body will eventually take over and limit them for me.

When I’m in a situation where I feel comfortable, I can handle longer interactions. If I have to deal with unstructured activities, unfamiliar places, new people, rapid shifts in conversation partners or topics, or any of a long list of other things I find challenging, I’ll hit my limit sooner. An hour might be all I can deal with before I start feeling a strong need to escape.

Since being diagnosed with Asperger’s, I’m getting better at “reading” myself. The anxiety, the need to escape, the withdrawal that precedes the uncontrollable shaking–these are not things I need to be cured of. They are signs that I need to take care–yellow lights to be heeded–and I’m learning to listen to them.

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.